Saturday, January 31, 2009

Cessation of againstness / don't push and pull

If I remember Gene Scott's sermon on the meaning of the word "shalom" correctly, he translated it as "cessation of againstness."

"Againstness" is pretty much the name of the game, for MS. It's no wonder we're always tired; our immune system (or so current thinking goes) is constantly gnawing away at our neural insulation, and our self-correcting nervous system is constantly occupied with self-correction to work around the damage.

I'm in quite the energetic funk, nowadays. I think I've been there for quite a while, but I'm only getting a real handle/focus/understanding of it now. I've got a lot of cold, fearful energy concentrated in my legs, and I spend a lot of effort working against it, trying to get things done despite what my legs want.

Which brings me to "don't push and pull." My kyudo (ritual Japanese archery, often called "Zen archery" but really it's more Shinto) instructor tells us this all the time. Pushing and pulling is struggling with the bow, an attempt to conquer it without really listening to what it's trying to tell you. Ideally, you "open," as he puts it: you open your arms wide like you were inviting the universe to give you a great big hug, offering your entire self and accepting absolutely everything you are given. Your right arm only bends because your thumb is attached to the bowstring. (I added a photo to my gallery, to illustrate the bow and the draw. Purists will note that the keiko-gi, the "shirt," is supposed to be white, and yes, I know that, but the white shirt completely blew out the photo's exposure, and that's all that needs to be said about that.)

And just saying this to myself today like a mantram, "Don't push and pull—open," I've felt a "cessation of againstness." The energy in my legs is less insistent about its distress, because it can tell that I'm listening, rather than denying it. And in not spending all of my energy in struggle against myself, I've gotten more done today than I have in... well, I can't really remember how long it's been. A long time, WAY too long.

Don't push and pull. Open.

Tuesday, January 27, 2009

The Quiet Truth

Recently, I find myself taking the same approach to problem solving:

First, tell the truth. Especially tell the truth about what you feel.

I was talking to one of my students today about history (he doesn't like it, and neither did I at his age). I told him that I didn't like it until I found a use for it, but that took me until something like the age of 25—"Wait ten years" not being much use as advice for a teenager.

But I found myself telling him, "First, let's get something out into the open. You don't like it, you think it's stupid, and you hate doing it. That's OK. It's what you feel. Now what's the challenge? We have to figure out what we have to do to get them (your teachers) to shut up, go away, and leave you alone. That's an easy problem. That we can do. And it's easier now that we're not carrying around all this weight, not being willing to admit that we don't like it. That's gone, and now we can get on to solving our problem." And from his expression, I think he actually felt better, being able to make his first move through the truth of his feelings.

I seem to be saying this sort of thing a lot recently.
  • What are you really afraid of?
  • What do you really want?

I don't beat around the bush anymore. I was never really someone afraid to "cut to the chase," but that's pretty much the only place I go anymore.

But quietly... always quietly. Very quietly.

Teaching me to approach the truth first, but to approach it peacefully, is definitely a gift of MS.

Saturday, January 24, 2009

Limitations force creativity

A favorite saying of Jeff McBride, one of my friends and teachers. A truth I'm going to be living tomorrow.

I have my first church organ job in many months, on an organ that has this very bizarrely proportioned console. Everything is in just the wrong position, and most problematically for someone (like me) who has malfunctioning legs, the pedal board is especially oddly proportioned. It took me several days of working with the instrument to convince myself that yes, my legs weren't working so well, but no, a lot of this is the console's fault and this does not augur the end of my organ-playing days.

So tomorrow I need to make everything sound "just right" when I'm not able to play at even close to "just right" levels.

It's going to be interesting. Fortunately, this organ does have an "auto bass" feature that couples the pedals to the lowest note you're playing, so if my legs simply go out, I can just hit "auto bass" and keep the hymns going. But there's going to be a lot of "use the Force, Luke!" moments tomorrow morning.

Which, fortunately, is something I've always been pretty good at... strange, that in some ways I've been preparing for my current limitations all my life.

And if I'm creative enough, my "limitations" won't limit the quality of my performance—just the method.

Thursday, January 22, 2009

Cutting to the chase

Two extremely interesting things that I've noticed have increased since I got The Disease are my patience (especially with teenagers) and my "pithiness," for lack of a better single word.

Kyudo definitely helped with my patience, but the MS has really helped. Of course I still steam up every now and then, but that's gotten a lot more infrequent since the diagnosis. I notice that I tend to get quiet, intent (but not necessarily intense), and direct without becoming blunt or cruel.

MS is very much the human condition writ larger than any of us really care to deal with. These bodies we drive around are convenient, yes—until they become inconvenient, and burdensome. MS just brings that point upon us faster than we had planned... which is, after all, also the human condition. It's just with MS, we can't put it off or deny it or not deal with it. It's there.

MS brings you into inescapable contact with impermanence, and the truth that you really don't have time simply to fritter away. I've always been a "let's cut to the chase" kinda guy, but more and more I find myself being very quiet, and very "to the point"—but always with kindness.

Because I don't have time to waste on indulging cruelty. Another gift of MS.

Tuesday, January 20, 2009

Blockety, block block/blockety, block block

Now, I've been seeing my acupuncturist since something like 1992, and I've gotten my share of these "block" things from time to time (I wrote about them earlier), and before The Disease they were occasional. Only a few times a year.

I spent most of last year on the "block a week" plan. I just finally had, I dunno, three months without them? And now I think I'm back to worse than "block a week": now, I think I'm on the block du jour plan.

Ho, let's see, how to describe this: Well, you can't see very far out of your own head (sometimes you can't even see past the edge of your corneas), you don't have stamina, or resilience, or... anything, really. It's not depression, it's energy-less-ness.

It's a self-sustaining state of perpetual depletion.

Each block takes four needles to cure. Two entry points, two exit points. And then, block's gone. Life is worth living again. Life is fun to live again. Normality reigns.

But for me... then the block comes back. Sometimes, a shock causes the block (someone shouts angrily at you, you're startled, all sorts of things can set it off) but for me the pisser has been that they just happen. I just got unblocked yesterday, nothing really shocking, stressful, or unpleasant has happened, and I know that I'm already blocked again.

This is another reason I agree with my Oriental-medicine caregivers that the real problem is upstream of the MS. Yeah, the MS is annoying and causes neurological malfunctions, but that's not the real problem.

Of course, I don't know what the "real problem" is, yet. Nor does anyone else. All they're able to do is treat me the way they meet me; yes, they do have long term plans for the direction they want to go ("little by little" is my herbalist's favorite phrase), but every treatment is different because they meet me, and treat me, at my point of need. Today.

And isn't that where we're all supposed to meet each other?

Sunday, January 18, 2009

Fire and ice

My legs have been where I feel the majority of the effects of the MS, and in ways that are very difficult to describe.

My first experience, a couple of years ago and before I got the diagnosis, I could only describe by comparing it to Tolkein's description of what happened when you struck a Nazgul with a weapon: your limb goes not just numb, but cold and dead. This has evolved into what more than one of my energy-working caregivers has described as "actually radiating cold." Right now, my legs below the knees are absolutely icy, and they feel that cold even under a down comforter that's too hot as far as my torso is concerned.

Although I'm sure there's at least some neurological component (I mean duh, MS is a neurological condition, not too big a leap for that one), I'm just as sure that much, if not most, of this is energetic. (Just try to find the insurance charge code for that.) And that, on some level, something, I don't know what, wants something, and when it gets what it wants, things will get better.

There's ice, and then there's fire. Fire (capital "F" Fire, in the five-element system) is where my challenges lie, and right now, one of the big problems in getting things manifested is the fire that strikes the spark, the fire of ignition, the fire that gets things going. If I can get out of my chair and move around, I'm fine. It's the "getting out of the chair" that's not doing so good right now.

The way through MS, for me, is listening. I'm trying to hear what ... whatever "it" is, that's trying to get through to me via MS... is trying to tell me. I'm starting to see interesting things about my own processes... but I'm not seeing whatever "it" is trying to show me, whatever that might be.

"Quit trying so hard" is a lesson a lot of different things in my life try to teach me; and in the attempt to learn which I... try too hard, and thus miss both the point and the lesson.

Interesting, that.

Saturday, January 10, 2009

Doing ... nothing

I've been sidelined by what most people would call a "cold," but is better described by what the TCM people call "heat": heat damaging the Lungs, entering through wind. My TCM caregivers attribute the base cause of my MS to heat in the Lungs (that's capital L, the orbisiconographical Lungs, not the anatomical lungs), so it weighs pretty heavily on me.

And I think I've got what the five-element acupucturists call an "entry/exit" block: essentially, a block in the energetic plumbing that keeps energy from exiting one meridian and entering the next one. Last Wednesday, I got treated for a major blockage along the two central meridians, which requires some particularly nasty points (but which my doctor did quite expertly, so the worst of them was only sort-of bad). And then I felt the block reform in the car on the way home. And there's basically nothing to be done about the block, or really about simply living life, until it's cleared. This particular block, my doctor says, may often be the root cause of what many people call "chronic fatigue syndrome."

And trust me, if you've ever had this block, you don't care where you have to get needled: you ask to get needled there.

But for once, I've responded to one of these Lung Heat attacks by doing... nothing. Usually, I just power on through, and suffer. A lot. Well, I'm still suffering, but not that much, because sometimes doing nothing is the right thing to do and right now, I'm doing ... nothing.

And it's wonderful.

I've spent years powering on through things. When push comes to shove and "you gotta do what you gotta do," I can. That's easy. Doing nothing... and not getting angry at yourself for "not accomplishing what you wanted to/were supposed to," that's hard.

And this is one of the gifts of MS that I'm really struggling with; struggling a lot with. I don't ever really recharge. I'm always "doing" things. "Not doing" things, or doing things simply to recharge... I don't know how to do that. And with the MS, I don't really have the luxury to "not recharge," because if I don't recharge, I can't do anything.

Laziness and inaction aren't "not doing." Just ask the Zen folks. Expect to be hit if you do (that seems to be the end of way too many stories, the roshi hits the supplicant and the student becomes enlightened). I supposed MS has hit me... I'm waiting for the enlightenment. Perhaps if I would "not do" more, it would come faster.

Tuesday, January 6, 2009


One of the great things about MS is that you become more sensitive to your body.

One of the worst things about MS is that you become more sensitive to your body.

Over the last couple of days, I noticed that it feels like life is returning to my thighs, the place I first felt "it" beginning, about four years ago. This is great. We've been waiting for the "remitting" part of "relapsing/remitting," and this is a big first.

Then again...

A couple of weeks ago, I started getting numbness in my face and inside my mouth, sort of like a dentist's novocaine injection that wouldn't go away. MD said it was my trigeminal nerve. Great. It's also given me a perpetual case of cotton mouth.

On the upside, it'll probably get me drinking more water just to keep my mouth bearable, especially since I have to talk a lot during the day. Which I need to do anyway, I tend to be perpetually dehydrated.

Not strictly a "relapse," but as the saying goes, it's the thought that counts...?

Friday, January 2, 2009

A little background...

Most folks who share their MS stories online often share some basics about their symptoms and treatment, so for those who are interested, here are the basics:

I was diagnosed last year, but I had been having a creeping onset of symptoms for at least two years before I realized that things were wrong enough, and not changing enough, to talk to my doctor about them. It took two tests: one a nasty EMG whose conclusion was that I had long-fiber nerve damage ("Well, we already knew that," my MD groused); the second an MRI, with the usual funny noises and mild gadolinium buzz. The neurologist who did the final diagnosis was, funnily enough, a former colleague of my university band director. I suppose the type of MS is "relapsing/remitting," but we won't know that until a few years have gone by and the pattern has been clearly established. Although as my wife said, "I'm still waiting for the 'remitting' part."

I refuse to have anything to do with the Western injectables. Something in my gut pushed back very hard when I thought about moving to them... not just "oh, no, that'll be a bummer, I don't want to do that, it'll hurt," but "No. That's wrong." I've never experienced anything like that before, and people that I really really trust told me to listen to that voice, and I haven't regretted it for a second. I'm very happy with my current treatment regimen.

I'm being treated by my MD (also an MS patient, who recently went off Copaxone and immediately reported that he felt better than he had for the three years he'd been on the drug) who does Worsely-school classical five-element acupuncture, a traditional Chinese herbalist, and not frequently enough (you start to run out of cash pretty quickly when the insurance doesn't help), a Qi Gong practitioner. All of them agree that MS isn't my problem, that's just the name us Westerners have given the symptoms; the real problem is upstream of the nervous system issues, and that's what they're treating. As I told a person interviewing me for an MS study, I go to the Qi Gong practitioner and tell him my legs are cold. He pokes me in a couple of places, waves his hands over me, and walks out of the room--and twenty seconds later, my legs warm up. Or I can shoot myself with Tysabri and maybe make my brain melt and die. Which do you think I'd rather do? (The interviewer's response: "You got that right.")

My problems are mostly sensory. The best phrase I've found so far is "data corruption." It's quite interesting how poor English is in describing insensitivity. There are a lot of ways to describe pain, but you're pretty much stuck with "numb" or "not numb," I haven't found a way to express "sort of numb" without making people rock their heads sideways, spaniel-style.

And of course, everyone with MS always has some issues that you definitely don't want to hear about. Fortunately, I usually laugh about them. (Most of the time, at least.)

Actually, now that I think about it--I pretty nearly always laugh about it. Laughter at the absurdity of your own predicament is definitely one of the gifts of MS.

Thursday, January 1, 2009

And we're off!

Multiple sclerosis is a disease with many gifts.

All of us who have it, we all know that it's a royal pain in the ... well, in my case, legs. It's a continually moving target. It's different every day. Sometimes every half day. Parts of our lives, abilities we once took for granted: things we no longer have, things we can no longer do. There are parts of our lives that are just over, and every day we may find that something else has simply... dropped away.

And yet, I maintain, it is a disease with many gifts. And there are things about my life now that are more full and beautiful than they were without MS, changes for which I am grateful and which I have to admit, I owe to MS.

And as one of my spiritual advisors said one day: I needed to get MS. Not "deserved to get"--needed to get. (That will probably take the rest of my life to really figure out, but even now I think... he may have been right.)

So, what is this blog about? Why are we here? So much material on the web is about fighting MS, struggling with MS, the battle against MS. And sure, I'll admit, I'd rather not have the spasticity, numbness, fatigue, and entertaining disfunctions of various bits of plumbing. But victory in a life lived with MS is not obtained by struggling, but by listening.

As one Olympic athlete put it, "Obey nature, and nature will obey you." In any relationship, both sides have to listen. Sometimes you need to listen to MS... and sometimes, MS needs to listen to you.

Welcome to the journey. To paraphrase the Grateful Dead: What a long, strange trip it is.